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Will you feel better after stopping your aromatase inhibitor medication & if so, when? (plus 5 updates)

Will you feel better after stopping your aromatase inhibitor medication and if so, when?

I mean, is that a loaded question or what?

Please remember this blog is never a place to get medical advice. That’s what your care team is for. It is a place to learn, discuss and share experiences and information.

You might want to read and/or download, Endocrine Therapy: The Ultimate Guide to Managing & Making Decisions about Your Aromatase Inhibitor Medication.

I haven’t written about the drugs we love to hate in a while and thought it was time I did. I’m sharing a couple personal updates as well as a couple research-backed updates about these drugs, or more specifically, the management of side effects from said drugs.

So, here’s update #1:

I am done with aromatase inhibitors! Woohoo!

My plan was to stay on for the full ten years. However, I decided to stop a wee bit early. I made it to a little over nine years. At that point, my oncologist and I decided it was “okay” for me to be done. That was about a year and a half ago.

So, did I start feeling better and if so, when?

Will you start to feel better after stopping your aromatase inhibitor medication and if so, when? #breastcancer #endocrinetherapy #survivorship #sideeffects

We’ll get to that, but first, let’s do a little recap about aromatase inhibitors, or as I’ve been calling them for years, the drugs we love to hate

Endocrine therapy, also known as hormonal therapy, is treatment used for many early stage breast cancers that are estrogen and/or progesterone positive. When given before surgery to shrink a tumor, it’s called neoadjuvant hormonal therapy. When given after surgery, it’s called adjuvant hormonal therapy.

Tamoxifen, aromatase inhibitors and specific drugs used for ovarian suppression are types of hormonal therapy.

This post focuses primarily on aromatase inhibitors.

What are aromatase inhibitors and why are they prescribed?

There are three aromatase inhibitors (referred to as ‘AIs’ from here on out) that have been FDA approved:

anastrozole (Arimidex®), letrozole (Femara®) and exemestane (Aromasin®).

The names in parentheses are brand names.

If your tumor was ER and/or PR positive, your oncologist might very likely prescribe an aromatase inhibitor after surgery, chemotherapy or radiation as part of your adjuvant therapy treatment plan. The intent, of course, is to prevent recurrence.

It’s noteworthy, too, that AIs are used to treat some types of metastatic breast cancer, usually, in combination with another drug. Our friends with MBC don’t have the option to just stop despite the nasty side effects of AIs. Let that sink in. I don’t say this to diminish an early stager’s experience. I share it because it’s something important to contemplate and remember.

Basically, these drugs block tumor growth by lowering the body’s natural supply of estrogen.

But, as we all know, lowering the body’s natural supply of estrogen also can create problems, for some of us anyway. Snuffing out a woman’s natural supply of estrogen is, well, unnatural.

So why do it?

Because cancer can create more havoc.

The side effects are nothing to sneeze at either and can, in fact, be quite unpleasant, impacting a woman’s quality of life. In fact, despite the benefit, the side effects cause many of us to stop taking these drugs early or even to opt out of starting on one at all.

All that is a big deal!

Some of those unpleasant side effects include: joint pain, muscle aches, bone loss (osteopenia and osteoporosis), bone fractures, lowered libido, hair loss/thinning, weight gain, hot flashes, mental fogginess and sleep issues, to name a few.

If you’re experiencing any or all of these, it’s not fun. At all.

Finally, doctors are listening, validating and trying to come up with side effect management strategies. Or at least more of them are. So, it appears our speaking up about these side effects is starting to pay off.

So, keep on doing that. Keep speaking up about any side effects. Speaking your truths is NOT complaining or whining. Speaking up is how things change and improve.

Some of you might remember a survey I shared about a while back about said side effects. The response to that survey was notable, with 2,353 women and 54 men responding.

Update #2 – A few takeaways from the survey were:

  • 111 respondents never started due to concerns about side effects.
  • Stage 4 patients were included and reported similar side effect experiences.
  • Musculoskeletal and physical changes such as weight gain and body image dissatisfaction were the most commonly reported side effects (from women).
  • 41% of respondents noted relief from side effect management strategies that were tried.

41% reporting some relief isn’t all that great. We definitely need better side effect management strategies.

Wait. We need less harsh drugs that cause fewer side effects to begin with!

To learn more about the survery results, visit Dr. Deanna Attai’s blog and read, Endocrine Therapy Survey Results. Thank you, Dr. Attai, for listening to us and thank you for heading up that survey.

Update #3:

Trials have been underway looking at genomic assays such as Breast Cancer Index Test (BCI) and researchers presented results (thus far) at the recent American Society of Clinical Oncology Conference (#ASCO21).

Stephanie L. Graff, MD, FACP summed up those results succinctly:

Researchers presented results from several studies looking at genomic assays, tests that look at the genes of the tumor itself. Some of these trials were designed to predict which patients would benefit from a longer course of hormonal therapy, while another trial looked at whether some patients could omit hormonal therapy completely. Although no clear answers emerged, it was a ray of hope of moving toward “less is more” and more personalized treatment for hormonal therapy.

Source for above: Takeaways from American Society of Clinical Oncology 2021 (ASCO) via Dr. Susan Love Foundation.

You can read the (confusing) details about two studies here and here. (Thank you, Dr. Attai, for sharing the links.)

If I’m surmising correctly, who benefits from these assays might be more nuanced. Study continues. This is important because determining who will and who likely will not benefit from extended endocrine therapy (EET) is a big deal. Meanwhile, we wait for those clear answers.

Source: Tweet (below) from recent #ASCO21 Conference.

Okay, maybe you will you feel better after stopping your aromatase inhibitor medication, but what if you don’t plan to stop any time soon?

How do you manage the unpleasant side effects now?

Keep reading and note the graphs within the Tweets below.

Update #4 – side effects management strategies

Evidence continues to come in showing that acupuncture helps to relieve aromatase inhibitor-induced musculosketal symptoms.

Source: Tweet below from recent #ASCO21 Conference. Note link to study within Tweet.

Fine and dandy. However, access and cost come into play here for many of us.

Just because a tool is there, doesn’t mean it’s usable for everybody.

Other ways to manage endocrine therapy issues (based on published data) are highlighted in diagram below:

Source: Tweet below from recent #ASCO21 Conference. Link within Tweet but not accessible (to me) due to content payment wall.

To clarify, in each color category on the wheel, the darker the color the more data there is to support the recommendation.

The one thing that comes up again and again is the benefit of exercise. There is no getting around this.

Physical movement is imperative for better health.

Of course, this is true for all of us, cancer or no cancer.

You might want to read my strategies: 13 Tips to Help Manage Side Effects from Aromatase Inhibitors.

Update #5

Again, back to our starting question, will you start to feel better after stopping your aromatase inhibitor medication and if so, when?

Maybe and hard to say.

Sorry to not be more definitive, but that’s my honest answer to both parts of the question.

Anecdotally, my experience has been positive. I do feel better now that I’m off exemestane. When exactly I started feeling better is hard to pinpoint. One day last summer, when I was recuperating following my DIEP surgery, it hit me – I was feeling better – regarding AI side effects.

I realized I was no longer experiencing quite as much joint pain, which for me, had been one of my worst side effects.

I also had managed to lose a few pounds. Of course, some of that was due to surgery. Nonetheless, I’ve been able to keep it off. Okay, mostly off. And yes, I still have a fair number of pounds to lose, but I have made progress. While on exemestane, I struggled to lose any weight. At all. I still take it off slowly. I mean, really slowly, but I can nudge things along a wee bit easier. And I have not changed my diet and exercise habits. I’m convinced the drugs make weight loss harder and weight gain easier.

Unfortunately, I can’t say I’ve noticed better hair. I’m fearing hair loss/thinning might be permanent. But that might be from chemo, as my hair hasn’t been the same since then. Nor have my lashes and brows, I might add.

Best thing of all, for me, since stopping my AI med is this:

My bone loss seems to have slowed and even reversed itself a tad. Again, woohoo!

My last bone density T- scores showed improvements over the last couple previous scans. The improvements were slight, nonetheless, there were improvements. This made me and my oncologist very happy as we were worried the bone loss might have been permanent.

Bone health is a huge deal. Sometimes, I don’t think this is recognized and treated as such. Not to the extent it should be anyway.

This may or may not give you hope that things might improve for you too. Emphasis on might, as we are all very different here too.

When you do stop, it will likely take some time before you notice changes in how you feel. Things don’t happen over night. At least they didn’t for me.

So, will you feel better after stopping your aromatase inhibitor medication?

Maybe so.

This does not mean I am endorsing stopping early. I am not. Let me repeat, I am not endorsing stopping early or not starting, for that matter.

As always, I do endorse learning all you can, speaking candidly with your care team about side effects (or lack there of), asking for help in managing any side effects that are bothering you and ultimately, making decisions about staying on or going off these drugs that feel right for YOU.

That’s it. Those are the updates I’ve got as of now.

If applicable, do you have any updates to share?

Have you at any time been on an estrogen-blocking medication as part of your cancer treatment and if so, what side effects have you experienced?

If applicable, has your medical team helped you come up with side effect management strategies and if so, which ones worked (or didn’t work)?

If you’re a man and taking an AI med, what’s your experience been like?

What research-backed updates about these drugs did I miss?

If you like this post, please share it. Thank you!

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Holly

Saturday 31st of July 2021

Thank you and your lovely readers for sharing their experiences. It is very validating. When I began the AI and complained about the side effects like joint pain, rage and suicidal ideation, the oncological nurse dismissed me with ‘it’s not from the drug’ and ‘you’ll get used to it over time’. Especially those newly diagnosed need to hear that indeed there are well documented side effects, and it’s not just you.

I was osteopenic (pre-cursor to osteoporosis) prior to BC, and diagnosed with osteoporosis along with my IDC. It took a year of asking my oncologist, and for me to focus enough to realize it wasn’t being addressed, before he referred me to a specialist for osteoporosis. The bone doc suggests Prolia, which maintains bone but doesn’t build bone, for the next 4 years that I have left on exemestane; then a few more years titrating down from the Prolia to minimize bone loss. He said you lose bone when stopping the Prolia. So at the end, I wonder net net how much bone do I keep? No one seems to know.

Also I wonder if anyone else has grappled with the question and how did you decide: at what point does the AI, with its bone demineralization side effect, actually hurt more than help my quality of life? Where do the lines of osteoporosis danger and cancer recurrence intersect? My experience so far is my oncologist refers to me to the metabolic bone specialist, and the bone specialist refers me to the oncologist!

Juliany maciel

Saturday 17th of July 2021

Hi Nancy, my name is julliany, I'm Brazilian, and I recently discovered your blog. I am 17 years old. I have been a Hodgkin's lymphoma patient since I was 15 years old. although we have different cancers, I identify a lot with some of your texts. they have been helping me during this difficult period I am going through (probable relapse). one year after performing 2 protocols (abvd and igev) and an autologous transplant. I would like to thank you for them. hugs from Brazil

Nancy

Monday 19th of July 2021

Juliany, I'm sorry you are dealing with Hodgkin's lymphoma, and I'm sorry to hear you are going through a probable relapse. Something about cancer connects us, no matter what sort or type we have. I'm glad some of my posts are meaningful for you. I wish you all the best as you move forward and deal with what comes next. Hugs back and thank you for taking time to comment.

Tarzangela

Wednesday 7th of July 2021

Funny you should mention AI therapy. I had one of my "every 6 month" appts with my Oncologist today. I have 3 more months till I will have been on Letrozole for 5 loooong years and I was eager to discuss whether he will let me stop taking it then.

Well, he had to look it up on his computer while I was sitting there and he read it under his breath so I had to listen to him mutter, read and watch him run his finger under the sentences on the screen for a good 5 minutes or so...... Now I don't know about you, but that doesn't give me the feeling of utmost confidence, but I do understand that he is an all around onco doc and sees so many people that are certainly way worse off than me with all kinds of different cancers. So why should I be special? Why should he know anything about me? Why should he even remember anything about me? Why did he ask me if anyone in my family has had cancer? Why did I have to tell him, again, that my brother died of bladder cancer? And both my grandfathers died of different cancers? And one of my great aunts died of pancreatic cancer? But none that I know of has had breast cancer. Perhaps I expect too much. But then again, it would have been nice if he had just taken a minute to get familiar with my chart, again, before he saw me today. It just would have been nice if....................ehh, whatever.................. After all, we have been "together" for 5 years...............

So after a little tap dance of his he talked about how IF he were to recommend another 5 years of something, it would be tamoxifen, because it doesn't affect bone density and then went on to say all the other side effects it does have, which I already knew. Believe me, I had researched my options till my eyes bled, which actually led me to this blog one day. (That was 5 weeks after starting anastrozole and suddenly getting carpal tunnel syndrome.) No thank you, really, I just don't want to take any more darn pills for awhile, dammit! As it is, I have to take a cholesterol drug because letrozole raised that. I was told to take calcium and vitamin D to combat the bone density problem, yup, my last two scans said I now had osteopenia even though I religiously took the vit D and calcium for 4 years. And then today he told me to stop taking the calcium because they are finding calcifications in the blood of people taking more calcium for bone density. Which can cause heart attacks strokes or other issues. That was a surprise to me. So I have been taking extra calcium for 5 years and now it is a bad thing? Sheeeit......what will they find out next? And I was already worried about what all the radiation could have done to my heart and lungs. Yes, I know the drill, benefit versus risk. And be damn thankful you have a choice for now. I get it, I really do. I am lucky, I am still going after 5 years. So far NED, so I am very lucky and grateful indeed.

So after he gave me the old 5 years versus 10 years story, you know, you MIGHT benefit from taking it longer to reduce possible disease progression, but they don't find it really benefits your overall survival rate. ??? That there is a very important distinction. Why? Because for me, it is now about my quality of life. I suffered months of carpal tunnel pain and ended up getting surgery. After that I suffered from de quervains and had multiple cortizone shots to control that. That when on for more than a year and then it just kind of went away. But, since I had a severe case of carpal tunnel, in my right hand, of course, now the tips of my fingers get numb and I can still get that "fallen asleep arm feeling" that is quite painful. Thankfully it doesn't persist once I shake it and stop doing the thing that makes it happen. Of course, I work with my hands for a living........... You will see me shake my arm a lot throughout the day........................ and open and close my hands because they are soooo stiff.

And by the way, no doctor that I mentioned my suspicions to validated my thought that it was related to taking the AI. Not one doctor. And yet, it is mentioned as a rare side effect of the medication. It was on the white paper the onco doc gave me the day we first met. Why were my concerns just brushed aside as if they were of little importance? I hope things have changed since then................

Okay, next bitch is weight gain, oh yeah, plenty of that going on here! No diet or exercise seems to negate that problem, been there done that. Then there is the joint pain, uh huh, got that too. Every day it is in a different place...................or the same place And I make a lot of noise getting up and sitting down. And OMG, don't ask me to kneel on the ground, it will take me a long time, and a lot of grasping at things and a lot of noise to get on my own two feet again. And you will laugh at me. So of course I try to just bend over to do things so I don't have to kneel, but then when I stand up straight, I am dizzy and have to grab something to stay standing up. Then I laugh at me. Sure, it would be great to exercise at the gym every day (or in my own personal home gym) and have my personal chef make me delicious low calorie, healthy foods every day........... If only I wasn't so sore and tired from working my ass off all day, then I would definitely go for that fantasy.

Then there is the brain fog.........................what was I saying? Where was I going? It is a little disconcerting when you are driving down the same familiar road and you realize you aren't sure where you are or where you are going. You just kind of... drift off......................

And then..............there are those awful words your doctor says while your legs are in the stirrups and she says that you have vaginal atrophy. Oh My! It's the Sahara desert in there.................. OMG, loss of libido, loss of spontaneity, loss of fun, lots of goop Yup, am there, doing that. I sure hope that after I stop the pill, that I will..................... heavy sigh..............

Oh and I haven't mentioned the perioral dermatitis on my face. That is ongoing, along with rosacea. I was actually embracing the whole wearing a mask thing since it covered up "issues". Dry flaky pieces and parts that flap in the breeze until you rip it off and cause more redness and discomfort. Had to go to a dermatologist to find out what that was. I had never heard of it before, but at least it had a name. Just one more thing to add to the chart of accounts that is in my medical history, and that's just for the last 5 years.

So, in conclusion, ........finally..........hmmm......what was I talking about? Okay, I'm tired.........think I'll go lie down...............

Oh, so, what I meant to say was don't let my experience influence your feelings on these meds. Everybody is different, you might get lucky. I have heard that some hardly get any side effects, lucky, lucky them, I say. I still hung in there because I wanted to make sure I followed thru on the suggested regimen for my cancer. I wanted to make sure I threw all I could at the menace that may or may not be my demise. I had to try. I had finish this. And hopefully, it won't finish me. I wanted to quit, every gosh darn day. But I didn't. And now 5 years have passed and I made it this far.

Now all I have to worry about is the next 5 years...................

Oh, crap............

Holly

Saturday 31st of July 2021

@Tarzangela, Congratulations for hanging in there! You are dealing with a lot. You are brave and smart and deserve a doctor who is familiar with your case. You are not asking too much in the most important medical relationship of your life.

PS My weight only started to budge on the keto diet, which yes, can also be time intensive and one more thing to deal with, and it was such a relief so see some of the weight come off. Self-compassion is my mantra.

Nancy

Thursday 8th of July 2021

Tarzangela, Guess my timing for this post was spot on for you then. You have certainly had way more than your "fair share" of side effects. As Linda mentioned, she keeps a spreadsheet of everything. Wait, I guess that was a different post she commented about that. I'm sorry you've had to deal with so many. But you've certainly maintained your sense of humor! My oncologist always encouraged me not to think in five-year or even one-year increments. That can be so over whelming. Take it three months at a time, or whatever helps. Not that it will, but maybe. At least you've made it through the first five years. Hoping you develop no more side effucks. Don't you love that term? Abigail came up with that one. Thank you for sharing your experience. I hope you're enjoying summer. Keep on keepin' on.

Abigail Johnston

Wednesday 7th of July 2021

I’m stage IV, so I’ll always be on something. I didn’t realize how much my joint pain was caused by Letrozole until I switched to Faslodex shots with Piqray for my second line of treatment. Amazing change!! I read and see so many people who want to stop taking meds after an early stage diagnosis and it breaks my heart — no one wants to be stage iv and if discomfort for a few years is the trade off, then please please please work with your doctor to manage the side effucks. I get it, they aren’t fun. But a stage IV diagnosis is soooooooo much worse overall and anything that can be done to reduce the risk of MBC is a MUST in my book. Glad you listened to your doc, Nancy, and made your medication regimen work for you and the best for you. My mom also took a combination of tamoxifen and Letrozole for 10 years after her early stage diagnosis and I’m so glad she did since she and I share the germline mutation, ATM.

Nancy

Thursday 8th of July 2021

Abigail, I bet it drives you a little nuts when you read others complaining about side effects and wanting to stop the meds. At the same time, I know you understand. I wanted to stay on for the full ten years as I wanted to do everything within my power to prevent recurrence. I feel like I've done all I can. I'm glad your mom was able to stay the course. Thank you so much for sharing your insights on this. Your opinions as a stage 4 person are so important. And I'm glad your joint pain improved!

Mary Foti

Wednesday 7th of July 2021

Thanks for this post, Nancy. I stopped taking Arimidex in February of this year after 10 years. I hated that drug and experienced a lot of unpleasant side effects, but I was more afraid of recurrence than the side effects so I put up with it. But sometimes my joint pain was so bad I could hardly walk up a flight of stairs. In retrospect, I should have communicated more with my oncologist about how awful I felt on that drug, but I was too scared she would tell me to stop and then my cancer might come back. Having seen my mom die of metastatic breast cancer, I was willing to put up with almost anything to avoid recurrence.

I have osteopenia now (developed that after 7 years). Overall I do feel better - but for some reason, my feet still hurt. That is a common side effect of Arimidex, apparently. I hope that goes away at some point. But I am still here, and that may or may not be related to Arimidex. Nevertheless, I’m glad I took it for 10 years. Even if it does come back at some point, at least I did everything I could to try and prevent it.

Nancy

Thursday 8th of July 2021

Mary, It's really good to hear from you. Like you, I was more afraid of recurrence too, so I stayed on for nearly the full ten years. Like you, I watched my mother die from mbc too and I did not want regrets about not doing everything possible to prevent recurrence. I'm sorry you had all that joint pain. Sometimes, it's hard to communicate candidly about side effects. You're not alone there. I hope the pain in your feet resolves with time. Hoping we both stay healthy. Thanks so much for sharing.

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